Friday, March 23, 2012

Appointment recaps and photos from the phone.

This has been the longest week of my life [for a long time.]  We started the week with an appointment and ended with one.  For the first time ever, we got good news at both appointments!!!  More on that at the bottom. 
For now, here is this weeks's photo dump.


Mabel  had her gastric emptying study on Monday.  Just like with everything else, we were hoping for some sort of answer.  A 'normal' test is great but it also still leaves us in confusion as to what is the cause of her vomiting episodes.  But the test was normal and we are thankful!

During physical therapy on Thursday, Mabel got to try out a stander for the first time!  There was alot of questions surrounding the topic so let me clarify:
This will not magically make Mabel stand or walk.  Her tone is incredibly low and she is very weak.  In fact alot of children with such low tone always have to use a stander.
The purpose of the stander is to get them to bare weight through their legs because without it, Mabel does not do this.  Imagine holding up a 'healthy' 6 month old and feeling their strong little legs pushing on yours.  This is not something Mabel does. 
Without baring weight for too long the bones in our hips, knees, and ankles do not properly fuse together causing some other serious medical issues.  As of now, Mabel has hip dysplasia in her right hip.  This basically means it is dislocating.  The stander is the only thing that her dr's can do to help this situation for the time being.  It will also help keep her upright so that her spine will 'hopefully' not continue to curve.
She did wonderful and we are so incredibly proud.

Today Mabel was sedated for the most accurate hearing test a person can have.  They tested her hearing clear to the brain stem.  I felt the last 2 years come full circle as I thought about the first night in the hospital with her and watching the nurse tell me that she had failed her hearing test-3 times.  She has had several tests since that time and failed them all.  In fact, most of the genetic testing we have had done has revolved around the fact that Mabel was considered 'deaf/blind' medically speaking.
Today we received great news!
Mabel's hearing is normal!
[we are reminded that with neurological issues such as seizures, it is always a concern that the sounds are not perceived correctly.  Knowing that her ears are structurally receiving the information and that her brain is interpreting the sound is so encouraging!]

This alone will help us with any further testing that we may do with her.  It is a great feeling. 
It's also a great feeling knowing that when she giggles at the sound of my voice, she is hearing it true to sound.  When she hears Nora say 'good morning, Mabel Audrine Flower!' she knows her sister's voice.  I am just so thankful.

I must say that I do believe that Mabel had hearing loss.  I don't always trust the doctors, and especially not statistics.  But this little girl clearly could not hear for the first few months of life and even in moments leading up to today I questioned her ability to hear.  I believe fully that God led us on the path that He has in order to bring us to today.  We have ran very crucial tests, genetically speaking.  We are about to be involved in some very extensive tests from this point forward. 
And today's information was necessary.  We were at a fork in the road and now we know which way to go.  If our girl can hear, it eliminates many diseases where hearing loss is evident. 
We need all the help we can get in this mystery journey and the Lord stepped in for us, as He always does. 
It doesn't always feel like it and after my weekend breakdown, I was drained of any spiritual energy.  But though my faith be small, my God is sure big. 

He is so so big.
Update on Abby:  Sage Elaine was born without a heartbeat yesterday morning.  She was 1 lb. 4 oz.  I saw Abby today and she is doing as well as could be expected. 
Thank you for continued prayers. 
God really is our comforter.

And today I want to leave you with this thought:
Recent statistics say that 90% of mothers who find out their child has Down Syndrome while in the womb choose to abort the child.

How many more then would abort a baby whose syndrome doesn't even have a name yet?
No treatment?  No support groups?  No answers?

Just something to chew on this evening. 
This is where we are.  In a place of unknowing, but a place of trusting.  God holds it in His hands.  He created Mabel; this beautiful mystery and He is guiding us in our decisions regarding her care. 
There is hope.
There is always hope.

[Please know that our God is a God of forgiveness and unending mercy.  If you have aborted a child for any reason, I am not condemning you.  In fact, I feel great love for you.  I can't imagine.  I am simply using the above statistic to point out that some families would give anything for the kind of options that a diagnosis like down syndrome might bring.  I am also not unaware of the medical seriousness of Down Syndrome.  I have read the research, I know the statistics and have seen it first hand.  It is not my intent to downplay the harshness and reality of this syndrome in any way.]

Have a good weekend friends.  I plan on sleeping in, watching my kids play in mud puddles, maybe joining them, singing to Mabel a little louder this time, looking for a rainbow, kissing my husband a little extra and slowing down to enjoy every bit of it. 
What about you?
Please share on our Raising Redheads facebook page.

Also-to see my phone photos before Friday, follow me on instagram!


Lindsay_Marie said...

aww Rame that is great to know she can hear you! Praying you get more answers with the upcoming test!

Elizabeth said...

Mabel looks great in the stander! And such great news on the ABR- hooray!

Jessica Kramasz said...

I'm so glad you received some good news, what a blessing. Mabel is so cute in her stander!